‘It sounds very negative’

Abstract

New developments in cancer research provide opportunities to reduce the amount or intensity of chemotherapy for patients with early-stage breast cancer (EBC), with the goal of achieving recurrence-free survival rates equivalent to the current standard of care while reducing the short- and long-term toxicities that are associated with more aggressive chemotherapy regimens. Clinical trials are necessary to determine the lowest effective dosage of chemotherapy, and there is interest from patients and providers to enroll eligible patients in these trials. Currently, the word being used to describe these trials is ‘de-escalation’. This paper considers the reactions of EBC patients and patient advocates to the word ‘de-escalation’ and how best to describe this approach and its anticipated benefits. Based on a patient survey and on interviews that were coded with the assistance of a content analysis program, we found that the participants tended to react negatively to ‘de-escalation’, with many associating this word with giving up in the war against cancer. Instead, the participants prefer positive, patient-centered language. This information will be useful to providers in considering how best to describe de-escalation clinical trials to eligible patients in ways that avoid therapeutic misconception and facilitate the shared decision-making process regarding treatment.